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00:00:13.157Welcome to the College Parent Central podcast.
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00:00:20.966Whether your child is just beginning the college admission process or is already in college, this podcast is for you.
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00:00:31.431You'll find food for thought and information about college and about navigating that delicate balance of guidance, involvement and knowing when to get out of the way.
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00:00:41.408Join your hosts, vicki Nelson and Lynn Abrahams, as they share support and a celebration of the amazing child in college.
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00:00:50.776Welcome to the College Parent Central podcast.
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00:01:01.965This is the place where we talk about all things connected to parenting our students as they think about going to college, as they transition to college, as they survive college.
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00:01:08.474My name is Lynn Abrahams and I am a learning disability specialist.
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00:01:11.225I've worked with college students my whole career.
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00:01:28.201In fact, I just retired from 27 years at a small liberal arts college working with students and their families, but I also have two sons that have gone through college and I've lived to tell that tale as well.
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00:01:33.391I'm here with my colleague and friend, Vicki Nelson.
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00:01:39.655Vicki, yes, hi, and then I'll introduce and then, yes, we have a guest, and that's the important thing.
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00:01:43.587So I'll try to speed this up because you don't want to hear from me.
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00:02:20.479I am a professor of communication at a small liberal arts college and I have Lynn Beat in terms of the number of years that I have spent but I'm not going to put a number on it and in addition to working with my students every day and seeing what I, you know learning from them, I also have three daughters who have gone to college and who have come out the other side, and so, like Lynn, I come to this topic as a professional who works with students and also as a parent, and so that's who we are, but, more importantly, we're here with someone.
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00:02:22.905So I know Lynn is going to introduce our guest.
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00:02:29.444Our guest is Annie Tulkin and we are thrilled to have her here.
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00:02:37.263She is going to be doing some talking about physical disabilities and health conditions in the college world.
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00:02:47.094Annie is the CEO and founder of Accessible College and founder of Accessible College, as well as an educator, author and public speaker.
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00:02:57.251She's an expert in the area of college preparation and transition, particularly for students with physical disabilities and health conditions.
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00:03:03.431Annie was the associate director of the Academic Resource Center at Georgetown University for nearly six years.
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00:03:15.908In that position, she supported undergraduate, graduate and medical students with physical disabilities and health conditions and oversaw academic support services for the entire student body.
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00:03:46.792Annie's worked with the disability field for her entire professional career, including positions as a regional disability coordinator for Humanitas Inc and worked on the Job Corps Disability Support Contract for the Department of Labor, and as a specialist with National Service Inclusion Project and University Centers of Excellence in Developmental Disabilities technical assistance projects.
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00:03:56.229Annie has worked a lot and in a lot of places and she's got a lot of information to share with us, and I want to welcome you to coming to our podcast.
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00:03:57.522Thanks, Lynn and Vicki.
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00:03:58.788I'm super excited to be here.
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00:04:00.882Super.
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00:04:08.534You know, I think that we'd like to start by asking you a little bit about your own personal story.
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00:04:11.248And how did you get to do this work?
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00:04:13.448Why are you doing this work?
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00:04:23.290Yeah, so in my long bio.
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00:04:32.446You mentioned that I was the associate director of the disability support office at Georgetown and the academic resource center.
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00:04:43.555There is the disability support office and as we're going into this conversation, we should probably tell people that there will be some language shifts that we're making and some things that we're talking about.
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00:04:47.228So universities all have disability support offices.
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00:04:53.312They all have different names accessibility services, student disability services, access services it's all over the place.
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00:04:59.173So Georgetown's is called the Academic Resource Center and my background is in education.
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00:05:20.870My undergraduate degree is in secondary ed and my master's is in special ed and I, when I was working at Georgetown, one of the things that really kept emerging in my work with students with disabilities was that so many students were coming in and they didn't really know what sorts of accommodations they could request.
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00:05:23.290They hadn't really thought about independent living and their needs.
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00:05:25.139They hadn't thought about continuity, independent living and their needs.
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00:06:14.826They hadn't thought about continuity of care, medication management, and as an educator, I was surprised, right, and I decided then that there was more support needed specifically for students with physical disabilities, so wheelchair users, mobility device users, students with sensory impairments, so hearing impairments, visual impairments, and students with chronic health conditions like diabetes, epilepsy, crohn's disease, pots, ehlers-danlos syndrome, because a lot of times those students didn't get the targeted support that they needed in high school to actually think through all of the types of accommodations they might need in the college setting, and they weren't familiar with the process for requesting accommodations and the self-advocacy skills that were needed.
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00:06:18.060So that's what sort of brought me to this work.
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00:06:22.829But more personally, I was diagnosed with a learning disability as a kid.
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00:06:40.985So my parents were both counselors, school counselors, and they recognized that I was not doing great at math and science and things like that, and so I was diagnosed with a processing disorder when I was in fifth grade and then as an adult I was also.
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00:06:44.089I've been diagnosed with chronic health conditions too, I think.
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00:06:54.934Like a lot of people, sometimes things emerge later on in life, and so I bring that personal experience as well into the work that I do with students and families.
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00:07:18.526And I work with students and families across the country and I have partnerships with the Christopher and Dana Reeve Foundation, the Muscular Dystrophy Association, other foundations as well, and I've done some work with the Perkins School for the Blind on creating a college readiness resource for blind and visually impaired students too, so we can share those resources in the notes.
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00:07:20.132I'm sure, yes, we will.
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00:07:39.471So you primarily do you work with parents, with students?
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00:07:40.172How do you split that?
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00:07:50.978The student has to self-disclose and they have to be able to connect with the disability support office professionals and have conversations about their needs and what accommodations they're requesting.
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00:08:05.788So it's a really great idea for students to start working on that before they get to college, right, so that they have the skills and the language and are prepared to have those conversations skills and the language and are prepared to have those conversations.
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00:08:41.847I also work with parents, and sometimes parents accompany students to some of the initial meetings, because parents, you know, they also have concerns and things that they're maybe not so savvy on too and need to learn a little bit about specifically around that transition, because many of the parents that I've worked with have been really strong advocates for their students for their whole life, right, and so it's hard sometimes as a parent and I'm also a parent to step away and to let your student navigate some of these things independently.
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00:09:07.841So there is a transition for both sets the student and the parent, and we have to acknowledge that in this work too, because it's that is a challenge for people, and so, yeah, so I work with with both parents and students, and I also have an online course that's called Preparing Students with Physical Disabilities and Health Conditions for College and parents that that I made that course specifically with parents in mind.
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00:09:38.841It's also for educators and healthcare providers and counselors, too, and it has CEU credits attached for the American Occupational Therapy Association and the Association of Social Work Boards too, because I figured like a lot of people who are connecting with students could really use this information and thinking specifically about how do students start to think about their accommodation needs, how do they start to plan for independent living?
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00:10:01.490And since there are fewer students who have physical disabilities and chronic health conditions, you know a lot of support people educators, parents, guardians don't have this information, and so I wanted to sort of demystify this process for people, so I created an online course to do that, in addition to the one-on-one work that I do as well.
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00:10:07.366And we're going to put some information in our show notes about how to find you.
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00:10:10.629Okay, there will be lots there in the show notes.
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00:10:29.974And you know you mentioned the idea of students having to, with some of these disabilities, having to learn how to navigate on their own and, you know, let parents step back just a little bit and do that.
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00:10:37.408So I guess I have a when and a what question, because I bunch my questions.
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00:10:54.655One of my questions can really be five questions, but I'll stick it to two, and it's what should students with these disabilities be looking for when they're looking at a college, and when should they start the process?
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00:11:02.791Is there a different timeline for these students than the normal sort of junior year kind of thing?
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00:11:06.341So, what are they looking for and when should they start that process?
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00:11:11.970Yeah, so two-part answer to a two-part question.
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00:11:21.702Fair, that's fair enough, so I always say that students with disabilities should start their college search just like any other student, right?
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00:11:22.606What are their interests?
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00:11:27.203What are they looking for, what sort of school culture, you know?
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00:11:36.235Do they want a big school, small school, urban, rural, price-wise, like looking at all the typical pieces that every other student is looking at?
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00:11:41.902For many of the students that I work with, they also might want to consider their healthcare needs, right.
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00:11:56.568So it could be thinking about, like proximity to health care providers or if they need, you know, specific medications or transfusions or infusions or care needs that they might have.
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00:11:58.929They might have to sort of factor that in as well.
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00:12:09.975And then for students with physical disabilities, if you're a wheelchair user, a mobility device user, you might be looking at the physical accessibility of the campus too.
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00:12:16.918But I think that the most important thing that a student can do is sort of look at the culture of the campus.
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00:12:18.639Is the culture inclusive?
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00:12:25.317Are the people on the campus willing to work with you, to support you, to meet your needs?
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00:12:32.490Because college accommodations are governed under the Americans with Disabilities Act, the ADA provides for reasonable accommodations.
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00:12:57.442So what is reasonable really varies based on the campus, the physical space, the program that the student is in, and so it's really important that students are having upfront conversations with disability support offices to sort of begin to understand what types of accommodations they may get if they choose to go to that school, and so I often encourage students to do that.
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00:13:06.373In terms of timing, I think you know most students tend to tune into this stuff about junior year because that's when the high school folks start talking about it more right, like.
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00:13:12.988So that's when everybody starts to think about it a little bit more critically and that is a great time.
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00:13:14.932The earlier you can start, the better.
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00:13:15.280Right.
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00:13:24.485So like if a student in a family wanted to start looking at schools or exploring options, you know, freshman, sophomore year of high school, that's totally fine, that's good, that's even better.
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00:13:32.515But junior year at least right, and I typically start working with students junior year.
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00:13:38.932That is when everybody's sort of turning on their brains and thinking about these things.
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00:13:55.928But in terms of sort of like my process and how I support students and thinking about it, you know we start looking at, like what accommodations they might need on campus, holistically so academic, but also residential, so in the dormitory dining accommodations.
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00:14:04.586A lot of students I support have different sorts of food needs or food allergies, transportation accommodations, recreation accommodations.
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00:14:24.191So we're thinking about things more holistically, right, and then also identifying the independent living needs, because a lot of the students that I work with might need support with some things like support with activities of daily living, like bathing, dressing, um, you know, getting eating, um, toileting.
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00:14:33.192So that could be a need that a student has and there's a whole process to think through on how that looks and how it works on a college campus.
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00:14:39.792And then also thinking about, just like medication management, continuity of care.
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00:14:42.283If you need to see doctors, how are you still seeing them?
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00:14:44.850Can you see them remotely?
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00:14:46.232Do you have to go in person?
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00:14:47.365How will you do that?
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00:14:56.794So there's a lot of sort of considerations that students might have to think about, sort of based on their conditions that they have.
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00:14:58.586I hope that answered your question.
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00:15:01.788Lots of good information there.
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00:15:18.587I want to ask a question about I want to go back to talking about an inclusive environment, like how do you tell and I know that that's sort of a vague question, but how do you tell it's going to be?
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00:15:23.969You know, how do you compare colleges in terms of inclusivity?
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00:15:35.174One question, and then I actually have another too, and that's who calls the disability office to ask those questions?
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00:15:36.505Does the student do that?
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00:15:38.025Will they talk to students?
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00:15:39.885Do parents do that?
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00:15:41.764How do you do that?
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00:15:43.707I'll start with the second question first.
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00:15:51.134So when I'm working with students, we create a list, a customized list of accommodations.
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00:15:57.594Then we also create a list of questions that the student can ask the disability support office.
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00:16:02.991I usually target those questions with the student to figure out how do we get beyond, yes or no.
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00:16:15.947Because I've been on the other side of the desk in a disability support office, I know that most families want the assurance that the student will absolutely get the accommodation that they are requesting.
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00:16:19.090And I'll say this straight up right here for everybody to hear.
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00:16:46.852You probably won't get an assurance before you commit to the school, sign the dotted line and submit your documentation, because the disability support office does not have to guarantee that they will provide a specific accommodation to a student who has not matriculated, who has not signed the dotted line and gone through the interactive process, and so that can be concerning for a lot of the families that I work with.
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00:17:01.600But, um, I like to use sort of um, open ended questions or like scenario based questions so you can see how the person on the other side of the desk is processing the information.
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00:17:06.951I also encourage students to ask like are there other students who use wheelchairs on this campus.
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00:17:13.931Can you connect me with those students too, because that's another great way to see, like, what has somebody else's experience been here?
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00:17:15.623How are they?
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00:17:18.088You know, how is the school meeting their needs or not?
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00:17:22.144And just to have a chit-chat In terms of the inclusive?
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00:17:26.473Oh wait, I should say the students need to reach out to the Disability Support Office.
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00:17:31.910Disability Support Offices don't really want to hear from parents.
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00:17:45.497Sorry, parents, I know this is a parent-focused podcast, but part of this is gearing up your students so that they are ready to have these conversations right, and so a huge piece of that is handing that over to your student.
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00:18:01.333So usually what I recommend is that, like, the student can script it out, and this is something that I do with students either have the student you know create an email and send that to the disability support office to set up a time to talk, or to script something out so that the student calls.
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00:18:20.107I found that for most students I work with, actually writing an email is a good starting point In most disability support offices once they see that the student has a specific type of condition, like POTS or Ehlers-Danlos, or if they say I have cerebral palsy and I use a wheelchair or I have a spinal cord injury.
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00:18:32.461That is different than most of the outreach that comes to the disability support office, and so people are quite receptive to that and they can understand why someone would want to ask more questions, right.
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00:18:43.346And so you know, I think that having that student do the outreach is really important because in the end, those are the people that the student is going to have to work with.
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00:19:02.654You know, for the next four probably four plus years, at least once a semester they will see those people, probably more, and so it's really important that the student is vetting the people in the disability support office to make sure that the student feels comfortable with those people and feels seen.
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00:19:10.980The student feels comfortable with those people and feels seen the inclusivity piece.
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00:19:14.066There are some like general ways that you can sort of vet universities.
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00:19:25.980First, there's about 21 colleges now that have disability cultural centers which are separate from disability support offices, support offices.
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00:19:32.777So disability cultural centers are identity spaces, much like a women's center or an LGBTQIA plus center or a black student center or minority student center.
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00:19:54.704All have different names at different places, but those identity spaces can be an indicator that there's at least conversations about disability, disability rights, disability history and a space for students to convene, right, that could be a potential indicator of a, you know, an inclusive environment.
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00:20:05.211There are 4,500 colleges in the US about and I said, what did I say 20, 21 disability cultural centers, so that's not a lot.
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00:20:15.474The other way that I often encourage people to sort of look at universities is to look at the student newspaper and do keyword searches Good idea.
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00:20:20.306Yeah, there's a lot of stuff in the student newspaper, it turns out.
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00:20:32.471So you know key terms disability, accessibility, you know diversity, inclusivity, even wheelchair, you know like, just look up some key terms.
00:20:32.471 -->
00:20:34.820Look for student clubs and organizations.
00:20:34.820 -->
00:20:37.867That's another kind of indicator too.
00:20:37.867 -->
00:20:52.653There are often health condition specific organizations, or even, you know, like mental health specific student organizations or disability specific clubs or organizations on campus, so that those can be helpful too.
00:20:52.653 -->
00:20:55.726And then like the physical spaces, right.
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00:21:05.131So some universities actually require accommodation statements on flyers and outreach, right?
00:21:05.131 -->
00:21:15.307So if someone needs an accommodation, so when you're walking around a campus you're checking out the place, like see if you see a flyer, does it have an accommodation statement?
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00:21:17.452Look at the admissions pages.
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00:21:22.551Do you see yourself reflected in these admissions pages, in the pictures, in the information?
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00:21:25.567Is there a section on the admissions page about disability?
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00:21:29.699Look at the mission and values of the disability support office too.
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00:21:31.102That's another great indicator.
00:21:31.102 -->
00:21:33.826Are they just about technical compliance?
00:21:33.826 -->
00:21:40.200Or is there mention of, you know, inclusivity, holistic care, that kind of stuff?
00:21:40.200 -->
00:21:43.320So those can be indicators, fabulous.
00:21:43.701 -->
00:21:44.921Great stuff.
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00:22:09.864So I'd like to follow that up, kind of back up to the first question or the first part of your multi-part question, that conversation with the disability office not having matriculated yet.
00:22:09.864 -->
00:22:25.883You know, as part of their selection process, as part of their finding out about the college do do disability offices and admissions, how much do they communicate?
00:22:25.883 -->
00:22:37.880I could imagine some students who might say I don't want to disclose a whole lot about my disability until I've been accepted because I don't want it to hurt my acceptance.
00:22:37.880 -->
00:22:41.489Is that something students should be thinking about?
00:22:43.053 -->
00:22:50.192The short answer is no Good, they shouldn't, because there's a firewall between admissions offices and disability support offices.
00:22:50.192 -->
00:23:05.276The admissions process is distinctly separate from the disability support office process and never the two shall meet, and so students can connect with disability support offices and have conversations totally separate from the admissions process.
00:23:05.276 -->
00:23:10.233People often get concerned about that, but you know, you guys have worked in higher ed.
00:23:10.605 -->
00:23:15.548Higher ed departments are very siloed, sometimes to a detriment.
00:23:15.548 -->
00:23:30.160I can assure folks that the admissions department is not calling up the disability support office and the disability support office is not calling up the admissions department to share information like that.
00:23:30.160 -->
00:23:33.221That is, that is illegal.
00:23:33.221 -->
00:23:50.839So also, like, students aren't asked to disclose a disability in the admissions process, so it's really up to the student if they want to disclose a disability, maybe in a personal essay or sometimes if they have gaps in education.
00:23:50.839 -->
00:24:06.397Many of the students that I work with have had flare-ups in their conditions or maybe they've had surgeries so they've missed school, missed high school, so there are gaps in their transcript and there's a place in the Common App where you can an additional information section where students can sort of explain what happened.
00:24:06.397 -->
00:24:13.134So that's a choice that the student can make in the admissions process.
00:24:13.134 -->
00:24:17.653But talking to the Disability Support Office doesn't impact the admissions process at all.
00:24:18.125 -->
00:24:26.027I think it's important that students understand that and be reassured and not be afraid to have those important conversations.
00:24:26.588 -->
00:24:36.837Yeah, I mean this is here's the other thing, just like to sort of blow everybody's mind for a second 21% of college students report having a disability at any institution.
00:24:36.837 -->
00:24:41.436It's at least between 10 and 20% of the students who are receiving accommodations.
00:24:41.436 -->
00:24:52.666So that's the largest marginalized group on any college campus period, and people with disabilities are one in four adults in the United States.
00:24:52.666 -->
00:25:15.099So there's a lot of us, and I think that it's a fascinating space to be in, because it's also a space where we just don't talk about it enough and so it seems like quiet and stigmatized, but in fact the numbers tell us a different story.
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00:25:40.990So I need to ask you this question, you this question what do you think, how do you think the current state right now of talking about disabilities and inclusion and on college campuses, how do you think that's going to impact students?
00:25:40.990 -->
00:25:43.095Do you know what I'm asking?
00:25:43.095 -->
00:25:46.660Yeah, like current state of where things are.
00:25:46.660 -->
00:25:49.627Yeah, so that are happening.
00:25:50.048 -->
00:25:54.055Yeah, so you know it's it.
00:25:54.055 -->
00:25:54.715This is.
00:25:54.715 -->
00:26:19.901This is highly it's complicated, but, but I think for most of us, like we believe as educators, that disability is an aspect of diversity, right, and so some universities actually had disability initiatives included in their DEI statements.
00:26:19.901 -->
00:26:24.050But I think there's sort of two pieces here.
00:26:24.050 -->
00:26:29.530First, the legal component right, so the ADA, the Americans with Disabilities Act, still exists.
00:26:29.530 -->
00:26:33.328Section 504 of the Rehabilitation Act still exists.
00:26:33.328 -->
00:26:35.881That's the law that is anti-discrimination.
00:26:35.881 -->
00:26:38.709You can't discriminate against a person because they have a disability.
00:26:38.709 -->
00:26:45.000They need to have access to education, hospitals and whatnot, and so we have those things.
00:26:45.000 -->
00:26:54.224So the accommodations component is still vibrant and solid and is there, and every student can still request reasonable accommodations.
00:26:55.425 -->
00:27:28.811The separation of sort of the identity spaces around initiatives on diversity and inclusion I think it's a challenging space right now, but there are colleges that do have disability cultural centers and are still working hard to make sure that students with disabilities are included in initiatives and are looking for students with disabilities to help bring, you know, bring a robust conversation into their university classrooms.
00:27:28.811 -->
00:27:39.460Right, because people with disabilities have lived experiences just like everybody else, and so I think that you know that is it's.
00:27:39.460 -->
00:27:51.439We're going to see less visibility around different tight aspects of diversity because of the sort of political climate right now, but that doesn't make it go away.
00:27:51.439 -->
00:28:15.521So I mean, when you think about the stats that I shared, right, it's like, well, we're all still here, so so it's really up to to students to, too, to sort of activate some of these pieces on campus and to be engaged and to be talking about themselves and their needs and their hopes and the things that they'd like to see in the future.
00:28:16.526 -->
00:28:19.915And I would think that different colleges and universities will be different.
00:28:19.915 -->
00:28:27.513I mean, you know, that's all the more reason to really check out sort of the atmosphere at different colleges.
00:28:27.874 -->
00:28:28.095Yep.
00:28:28.734 -->
00:28:38.953Yeah, so okay, Vicki, your turn, yeah my turn and I'm thinking how to frame a question I'm curious about.
00:28:38.953 -->
00:28:48.393I mean, we know well, I'm a professor, so I like to think that academics are the most important part of a student's college life.
00:28:48.393 -->
00:29:07.094After many, many, many years, I am coming to the conclusion that that's not true, because students have a life beyond the classroom and for most students that's more important than what happens in the classroom and it's not inappropriate.
00:29:07.094 -->
00:29:20.877So I'm thinking of things like housing and extracurricular activities, and how might some of these disabilities affect housing?
00:29:20.877 -->
00:29:26.486I mean certainly access if you're in a wheelchair or something like that.
00:29:26.486 -->
00:29:34.140But single rooms, service animals, you know those sorts of things.
00:29:34.140 -->
00:29:41.011You know students who can't hear a fire alarm or some of those sorts of things.
00:29:41.011 -->
00:29:49.490How might that affect housing or a student being able to fully participate in the life at college?
00:29:50.452 -->
00:29:57.736Yeah, so those are all spaces where students would be able to request accommodations, right?
00:29:57.736 -->
00:30:03.388So every college, typically through the disability support office, has a housing accommodation process.
00:30:03.388 -->
00:30:26.107So if a student needs a specific type of housing accommodation, like an ADA-accessible room or a room with an en suite bathroom or a walk-in shower or, let's say, visible fire alarms if they are deaf or hearing impaired, then they would make that request as a part of the housing accommodation process.
00:30:26.107 -->
00:30:38.267Housing accommodations having been the person who processed all of these housing accommodations on the disability support office side at one point in my life are granted based on demonstrated need.
00:30:38.267 -->
00:30:39.230So, like, what is the student's need?
00:30:39.230 -->
00:30:40.252Why do they need what they're asking for?
00:30:40.252 -->
00:30:41.035What's their condition?
00:30:41.035 -->
00:30:42.058How does the student's need?
00:30:42.058 -->
00:30:43.683Why do they need what they're asking for?
00:30:43.683 -->
00:30:44.526What's their condition?
00:30:44.526 -->
00:30:46.391How does the condition impact them?
00:30:46.391 -->
00:30:50.448Why are they asking for what they've asked for, and is that reasonable?
00:30:51.069 -->
00:31:00.478And then availability, which is the trickier one, because, you know, I worked at an institution that was initially built in 1789.
00:31:00.478 -->
00:31:04.452The housing has been updated since 1789.
00:31:04.452 -->
00:31:09.691But, you know, physical accessibility, especially on historic campuses, can be challenging.
00:31:09.691 -->
00:31:26.787And even if housing has been updated after the passage of the ADA, which was in 1991, you know there are a finite number of spaces that may have been brought up to technical ADA compliance.
00:31:26.787 -->
00:31:35.836And then there's this other piece that we don't often talk about is like what is technically compliant may not actually work for that specific student right.
00:31:35.836 -->
00:31:58.010So, like I work with a lot of students who have neuromuscular disorders, muscular dystrophy, spinal cord injuries, and the needs of one student with one type of wheelchair are different from the needs of so, like a manual wheelchair user who has use of their hands different from a student who uses a power wheelchair and maybe uses a joystick or doesn't have the same hand mobility right.
00:31:58.010 -->
00:32:04.092So like entrances and technical compliance and push buttons and things can look different for different people.
00:32:04.092 -->
00:32:20.770And this is where a student would really want to engage that disability support office to have conversations about what could potentially what their room could look like or what sorts of housing might that university have.
00:32:21.731 -->
00:32:58.945I've encountered a lot of places recently where the first year residence halls don't have any en suite bathrooms and you know I have students who have gastrointestinal conditions or they also might have, like you know, toileting situations where they're, they have like tubes and they're changing things out and colostomy bags and I navigate all of these things with people and so thinking about, okay, like how would that work in a community bathroom setting or what other options might there be?
00:32:58.945 -->
00:33:14.835And so sometimes students might ask to live in an upper class placement so that they can have access to those other things, and that could be a reasonable accommodation if there's a room available, because upper class students choose their rooms, you know the year ahead.
00:33:14.835 -->
00:33:18.478So then there's that question about like, well, what's available and how does this work.
00:33:18.478 -->
00:33:23.596But, yeah, students can ask for accommodations around all of those pieces.
00:33:23.596 -->
00:33:33.672Um, and it's really important and this is where I I can be really helpful too in working with students and families and thinking through what are the specific things that we're requesting.
00:33:33.672 -->
00:33:49.378Um, because a lot of times students haven't lived independently before, maybe they've been to a camp or something like that, but, um, they're not thinking about sort of all of the pieces, and so I spend a lot of time with families thinking about all of the moving parts.
00:33:49.378 -->
00:33:53.391With recreation, you can still request accommodations too.
00:33:53.391 -->
00:34:05.659So, for you know, to attend a, you know, a speaker event or a concert on campus or a sporting event, all of those fall under reasonable accommodations.
00:34:05.659 -->
00:34:10.626The way that clubs and things are handled can be a little bit different from school to school, right?
00:34:10.626 -->
00:34:25.887If someone needs a sign language interpreter or something that costs money, you know they are going to have to talk to the disability support office and figure out how can we get an interpreter for that club or how can we make that space accessible, can we move it to a more accessible space.
00:34:25.887 -->
00:34:32.547So that is, you know that's something that students will have to think about.
00:34:32.547 -->
00:34:46.313As they're, you know, engaging with these schools and looking at them Specifically for students with physical disabilities too, I often encourage students, when they're going on tours A, to look for an accessible campus map.
00:34:46.655 -->
00:34:52.936Does the college have a map that shows you all of the accessible entrances, the accessible routes, the accessible bathrooms?
00:34:52.936 -->
00:34:54.681I mean, it's 2025.
00:34:54.681 -->
00:35:03.592There's no reason that we can't have these things and have it on a map so that people can actually access it, because it's good for everybody, right?
00:35:03.592 -->
00:35:14.103If you know, if an older person's on that tour, if a parent in a stroller is walking around the campus, like great information for people to have Universally designed, right?
00:35:14.103 -->
00:35:15.869So we're thinking about everybody's needs.
00:35:15.869 -->
00:35:20.766So that's something I usually tell students to look for If they're signing up for a tour.
00:35:20.766 -->
00:35:23.891Is there a way to request accommodations for?
00:35:23.931 -->
00:35:24.351that tour.
00:35:25.393 -->
00:35:37.688You guys would be surprised how many universities do not have a place where a student can request an accommodation and then the students having to call, the parents having to call a lot of hullabaloo ensues.
00:35:37.688 -->
00:35:40.012So I would look for that too.
00:35:40.012 -->
00:35:52.650It tells you something about the space and the place, and also, where are the accessible entrances located?
00:35:52.650 -->
00:35:54.076The student has to live there nine months out of the year, right?
00:35:54.076 -->
00:35:59.650So it's like do you want to be entering every building around the back by the dumpsters every single day or not?
00:36:00.172 -->
00:36:09.413You know, and like you know and like that you know, people make decisions on where they want to go to school, you know, based on a lot of different priorities and criteria.
00:36:09.413 -->
00:36:19.992So the student really has to feel comfortable in that environment, right, and they might choose to go to a place that, on the face of it, looks less physically accessible.
00:36:19.992 -->
00:36:29.739But maybe the people or the environment you know, the accommodations and the supports that they're getting, outweigh some of the physical.
00:36:29.739 -->
00:36:55.907You know, navigational pieces, and it's a personal question for each individual student on what you know, what they want their priorities to be and what they envision their experience in college being priorities to be and what they envision their experience in college being Wow, it's complicated, there's so many layers, so many extra layers for these students.
00:36:55.927 -->
00:37:22.844But you know, it strikes me, as you're talking about that and pointing out that you know they have to weigh their priorities and all that, perhaps sometimes these students have given more thought to their experience on a college campus than other students who've just sort of coast along and haven't really thought about how is it going to feel for me on this campus, and so they may have a bit of an advantage.
00:37:22.925 -->
00:37:28.717I would just interject to say like sometimes I mean, these are also typical teenagers in many ways, right?
00:37:28.717 -->
00:38:03.193So it's like sometimes they're just like I want to go to a Big Ten school and whatever you know like, and go to the sports games and everything in between, right so I encounter families where people have been like, really diligent and are thinking about accessibility up front or thinking about their healthcare providers, and then I encounter the other thing where they've put no thought into anything related to their condition or disability, but lots of thought into the sports or the academics or the program, right so, and it just it's unique to each individual and how they're thinking about the process.
00:38:03.405 -->
00:38:04.068Yeah, with or without disabilities.
00:38:04.068 -->
00:38:05.759Yeah, yeah, it's pretty to each individual and how they're thinking about the process.
00:38:05.778 -->
00:38:11.416Yeah, with or without disabilities, Every, every, every every one of them is different.
00:38:14.246 -->
00:39:30.704So I just in doing, in getting ready to talk to you and doing a little bit of of poking around to see some things I don't want to get into I mean we talked about this a little bit before we started recording that we could have nerdy conversations and dig deep into all of this, and most parents don't need or want to hear that, but some of the statistics that I saw were really interesting in that the number of things like ADHD and learning differences and autism and some of those things, the percentage of students with those kinds of learning disabilities far outweighs the percentage I mean of of students with physical disabilities mobility issues, chronic issues, brain injury, those sorts of things and so the fact that that this population of physical disabilities is so small, um, and I'm not sure where my question is but how does that impact students' experience?
00:39:31.190 -->
00:39:33.016What should they be ready for?
00:39:33.016 -->
00:39:43.485The fact that I mean you mentioned the percentage, you know, 20% and that feels like wow, 20%, that's a lot, but it really isn't.
00:39:43.485 -->
00:39:50.344And so what can they anticipate about their experience when they're in such a small minority?
00:39:51.994 -->
00:40:01.639Yeah, I think the fact is, like you said, that most of the students who are requesting accommodations in college have learning disabilities.
00:40:01.818 -->
00:40:09.121Add, autism, mental health conditions is like the next highest request for accommodations.
00:40:11.110 -->
00:40:35.047You're totally right in saying that students with physical disabilities are a smaller part of the population I think it's six or seven percent and so I would say that sometimes that means that people on the university side, on the disability support office side, may have less experience sort of helping a student navigate the accommodations request process.
00:40:35.487 -->
00:40:59.106Most students that I talk to think that there's like a menu of accommodations or something that they'll get to choose from or, like you know, they expect that the people in the university will sort of know what that they're going to need, when in fact the university is oftentimes relying on the student to say this is what I need and these are the accommodations that I'm requesting.
00:40:59.106 -->
00:41:18.152My preparation with students who have physical disabilities and chronic health conditions is help them think through what those accommodation requests are going to be, so that they have a list sort of prepared, so that when they're going into those conversations it goes a little bit easier.
00:41:18.152 -->
00:41:36.806I would also say that sometimes it means too that, like that, many professors might sort of lump students together because as a professor, vicki, you've been on the other side of that desk or in front of that chalkboard.
00:41:38.389 -->
00:41:38.931Chalkboard.
00:41:38.931 -->
00:41:40.317You just dated yourself.
00:41:40.317 -->
00:41:41.199I am an old lady.
00:41:42.710 -->
00:41:52.193Whiteboard, promethean board or whatever whiteboard, a Promethean board or whatever.
00:41:52.193 -->
00:41:55.304So you know, professors get an accommodation letter that states what accommodations the student has been approved for.
00:41:55.304 -->
00:42:00.918It doesn't tell the professor what the student's condition or conditions are right.
00:42:00.918 -->
00:42:09.460And so I think sometimes professors get a lot of accommodation letters, especially if you're in a larger state school where you might have, you know, 200 students in your class.
00:42:09.460 -->
00:42:14.159If you're figuring, 20% of those have accommodations or needing them.
00:42:14.159 -->
00:42:16.911So you're getting a bunch of accommodation letters coming in.
00:42:17.492 -->
00:42:20.659You're thinking most of those students likely have learning disabilities.
00:42:20.659 -->
00:42:22.449That's just how it kind of.
00:42:22.449 -->
00:42:41.603You're just like, oh it's a wash of this, right, when in fact someone might have Ehlers-Danlos Syndrome or a condition that has unpredictable flares, right, so they might have you know anything really epilepsy, diabetes, something that needs to be monitored.
00:42:41.603 -->
00:43:23.019So you know it's really important that they've actually had a conversation with the professor about what that's going to look like in that class, right, and what the expectations are, so everybody's on the same page.
00:43:23.019 -->
00:43:26.719So for a lot of students that's like a little bit of extra work.
00:43:28.387 -->
00:43:46.235In the disability community we often talk about like fatigue, of having to just keep talking about your needs and keep requesting things, but it is a reality, especially in the college context, for students who have to constantly remind people.
00:43:46.235 -->
00:43:54.153This is my accommodation, this is what I need, these are the things that I have, and that's just.
00:43:54.153 -->
00:43:55.396It's something that I help students sort of prepare for.
00:43:55.396 -->
00:44:03.036You know, oftentimes we will make canned emails so that they have them ready to go, so that they can just hit, send, copy, cut and send.
00:44:03.036 -->
00:44:08.003But that's something that students really need to be prepared for.
00:44:08.003 -->
00:44:08.623Yeah.
00:44:11.471 -->
00:44:12.974So it really strikes me.
00:44:12.974 -->
00:44:43.853I mean, you talk a lot about, you know, this is what I work with students to do and for students who may not be working with you, for parents to what I'm hearing as you're describing all of that is the ability to self-advocate, and so parents can really work with their students on identifying that list and then understanding how to self-advocate, because I think sometimes that's hard for students.
00:44:43.853 -->
00:44:50.514They feel as though they're you know they're being a pain or they're you know they don't know how to express.
00:44:50.514 -->
00:44:54.563This is this is what I need and this is why I need it.
00:44:54.563 -->
00:44:57.195So, yeah, and shameless plug.
00:44:57.755 -->
00:44:58.717Yeah, shameless plug.
00:44:58.998 -->
00:45:08.016I do have an online course preparing students with physical disabilities and health conditions for college, and a lot of times I'll have parents and students take it together.
00:45:08.016 -->
00:45:20.478So it's like they get the understanding of the laws, they get the understanding of how to create their list of accommodations, questions to ask, thinking about independent living, continuity of care, preparing for medication management all of that is in there.
00:45:20.478 -->
00:45:27.215But more generally, it's like students can start to work on that and parents can start to lengthen the leash a little bit, right?
00:45:27.215 -->
00:45:35.625So, like during a 504 plan meeting in high school, having conversations there, letting the student lead, letting the student read their IEP.
00:45:35.625 -->
00:45:38.775If they have an IEP, the student has a neuropsych evaluation.
00:45:38.775 -->
00:45:39.559Have they read it?
00:45:39.559 -->
00:45:40.875Do they know what's in there?
00:45:40.875 -->
00:45:43.518Like, do they know what their doctors are writing about them?
00:45:48.769 -->
00:45:57.094Because, whether or not parents like it, like the student is going to have to be well-versed on their, on their condition, and like part of that, I think, is actually knowing, like what the quote unquote professionals have said about us.
00:45:57.094 -->
00:45:58.599Right, like so.
00:45:58.599 -->
00:46:11.583So if we don't know what's in those things like, it's hard when the person on the other side of the desk has already read all this information about you, very personal information you should know what information that you've submitted right.
00:46:11.583 -->
00:46:18.103So, like those are like little things that students can start to do and start to digest, really too.
00:46:18.103 -->
00:46:30.815Because you know, I'm all I remember sitting, you know, at Georgetown in the disability support office there reading documentation, and then asking the student and they're like, wait, it says what in there?
00:46:30.815 -->
00:46:33.530And I'm like I don't, didn't you read it?
00:46:33.530 -->
00:46:34.251It's about you.
00:46:34.251 -->
00:46:57.041Here you go, Read what this person said about you, you know, and they're like, oh well, yeah, I guess it is kind of like that and so, yeah, so I would say that that, like you know, parents can start working with students on thinking about these things early on, starting to boost those independent living skills too.
00:46:57.061 -->
00:46:58.405So, like, medication management is a classic one.
00:46:58.405 -->
00:47:03.822Whether you have ADD or epilepsy, you know the student's going to need to figure out how are they getting their medication.
00:47:03.822 -->
00:47:05.311You know how are they?
00:47:05.311 -->
00:47:07.960Are they putting it in in pill packs?
00:47:07.960 -->
00:47:10.474Are they using a reminder system?
00:47:10.474 -->
00:47:11.817How are they doing that?
00:47:11.817 -->
00:47:17.034And the best time to start is before they get to school or they go to college.
00:47:17.034 -->
00:47:42.235You know, start today, um, in high school, where they're still in a supported environment, so that you know if, if the, if the wheels come off, they're still at home and it's not all going to fall apart, but we need to start working on those skills because I've always blown away at how many students really have no idea, have never refilled a prescription, don't even know their doctor's name or how to make that phone call?
00:47:42.335 -->
00:47:43.059Yeah, no idea.
00:47:43.059 -->
00:47:48.461So those are like the adulting skills that people can work on.
00:47:48.690 -->
00:47:50.695And that's true for all students.
00:47:50.695 -->
00:47:54.503Disabilities are not those daily living things.
00:47:54.869 -->
00:47:55.130Yeah.
00:47:55.130 -->
00:48:11.570So, annie, we could talk all day, okay, because there's lots of good stuff here and I think you've given parents quite a bit to think about, which is fabulous, and I think you've given parents quite a bit to think about which is fabulous.
00:48:11.570 -->
00:48:19.565One of the questions we always ask folks that we interview at the end is if you we're asking if you have any books you could recommend.
00:48:19.565 -->
00:48:23.231We're, vicki and I are both readers and you know.
00:48:23.231 -->
00:48:27.282Are there any things you could recommend for either parents or students?
00:48:27.610 -->
00:48:27.751Mm-hmm.
00:48:27.751 -->
00:48:28.371Are there any?
00:48:28.411 -->
00:48:29.954things you could recommend for either parents or students.
00:48:29.954 -->
00:48:37.605I have lots of books that I am reading, but one right now, and some are academic and some aren't.
00:48:40.909 -->
00:48:43.751I read some romance novels as well personally, I like mysteries.
00:48:43.851 -->
00:48:45.253We can talk about those later.
00:48:46.213 -->
00:48:51.759But the one book that I think is like really, really important is being Human.
00:48:51.759 -->
00:49:00.224It's called being Human an Unrepentant Memoir of a Disability Rights Activist, and it's by Judy Heumann.
00:49:00.224 -->
00:49:25.402And Judy Heumann passed away about two years ago and Judy Heumann was a disability rights activist in the United States who was pivotal in passing Section 504 and passing the ADA, and she had polio as a kid and was a wheelchair user and she was also an international disability rights activist as well, and it's a great book.
00:49:25.402 -->
00:49:38.331And if you're not into reading books because some people aren't I would recommend the documentary Crip Camp.
00:49:38.331 -->
00:49:39.454It's C-R-I-P-C-A-M-P Crip Camp and you can watch it on Netflix.
00:49:39.474 -->
00:50:02.652It was a documentary that came out a few years ago and was nominated for a bunch of awards and it was on Judy Heumannann is featured in it and it was on a camp that was in upstate New York for young adults with disabilities and how they used that camp as a catalyst for passing section 504 and then passing subsequently the Americans with Disabilities Act, and it's just.
00:50:02.652 -->
00:50:11.860It has like old footage from the camp and all these people who went to the camp and how this camp impacted them, and it's an amazing documentary.
00:50:11.860 -->
00:50:14.038So Netflix you can also find it on YouTube too.
00:50:14.038 -->
00:50:15.255You can watch it there as well.
00:50:15.255 -->
00:50:17.556So those are my recommendations.
00:50:17.876 -->
00:50:18.498Fabulous.
00:50:18.498 -->
00:50:19.422I'm thrilled.
00:50:19.422 -->
00:50:21.295I can't wait to find both of those.
00:50:21.295 -->
00:50:23.882I haven't, so thank you, thank you.
00:50:24.931 -->
00:50:31.072So you're going to give us all kinds of information to put into the show notes, but very quickly.
00:50:31.072 -->
00:50:39.958If parents wanted to learn more, wanted to reach out, what would be the best way for them to follow this up?
00:50:40.460 -->
00:50:44.800Sure, they can find me on my website, which is accessiblecollegecom.
00:50:44.800 -->
00:50:48.302I'm also on Instagram at Accessible College.
00:50:48.302 -->
00:50:50.831I'm on Facebook at Accessible College.
00:50:50.831 -->
00:50:55.621I also have a Facebook group with two independent college consultants.
00:50:55.621 -->
00:51:02.974The group is called College Success Physical Disabilities, chronic Health and Mental Health, and we'll put a link in the show notes.
00:51:02.974 -->
00:51:04.318It's a great group.
00:51:04.318 -->
00:51:12.061It's open for anybody who's interested in learning more about students with physical disabilities, health conditions, mental health conditions and going to college.
00:51:12.061 -->
00:51:16.989Yeah, so we'll put all of that, those contacts, in the show notes.
00:51:16.989 -->
00:51:18.431Yep, great.
00:51:20.195 -->
00:51:49.206Thank you so much for spending time with us and sharing so much information with us and sharing so much information and as we have these conversations about disabilities, we've had quite a few about learning disabilities, and so this is really nice to look at this, but I'm always struck, as someone who's not in that world, how much of the advice holds for any parent, any student.
00:51:49.206 -->
00:51:54.922If you just listen, there's so much that everybody can pull from this.
00:51:54.922 -->
00:52:00.543So thank you so much for taking us into the physical disability world.
00:52:01.210 -->
00:52:02.635Yeah, thank you both for having me.
00:52:03.010 -->
00:52:07.474And thank you to everyone for joining us and we'll see you next time.
